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Full text of "What Black Women Should Know About Lupus: Ideas for Community Programs"

What Black Women Should 
Know About Lupus: 

Ideas for Community Programs 




NATIONAL INSTITUTES OF HEALTH 
National Institute of Arthritis and Musculoskeletal and Skin Diseases 



£G The Task Force on Lupus in High Risk Populations uses the butterfly as its logo. 
This logo has special significance because one of the more common signs of 
lupus is a red rash or color change on the face, often in the shape of a butterfly, 
across the bridge of the nose and the cheeks. 



i\\msu^-\o 



What Black Women Should 
Know About Lupus: 

Ideas for Community Programs 



Produced by the Task Force on Lupus in High Risk Populations 
National Institute of Arthritis and Musculoskeletal and Skin Diseases 



This material is not copyrighted. Readers are encouraged to duplicate and distribute it. 
Additional copies are available from the NIAMS Task Force on Lupus in High Risk 
Populations, National Institute of Arthritis and Musculoskeletal and Skin Diseases, Box AMS. 
9000 Rockville Pike, Bethesda, MD 20892. 



CONTENTS 



NOTE TO PROGRAM PLANNERS 1 

ABOUT THIS KIT 3 

HOW TO DEVELOP A LUPUS AWARENESS PROGRAM 7 

SAMPLE PROGRAM PLAN 9 

CREATIVE ACTIVITIES TO CONDUCT IN YOUR 

COMMUNITY 11 

HOW TO WORK WITH THE MEDIA 19 

SAMPLE PUBLIC SERVICE ANNOUNCEMENTS 23 

SAMPLE LETTER TO PUBLIC SERVICE DIRECTOR 26 

FILL-IN-THE-BLANKS PRESS RELEASE 27 

SAMPLE LETTER TO THE EDITOR 28 

SAMPLE FEATURE STORY PITCH LETTER 29 

HEALTH WATCH: BLACK WOMEN AND LUPUS 30 

HOW TO USE THESE CAMERA-READY MATERIALS 33 

WHAT BLACK WOMEN SHOULD KNOW ABOUT LUPUS 35 

POSTER 47 

FACTS ABOUT LUPUS AND BLACK WOMEN 49 

CHECKLIST ON SIGNS OF LUPUS 51 

TEST OF LUPUS KNOWLEDGE 52 

BILL STUFFER/BOOKMARK 54 

STATIONERY 55 

LOGOS 57 

HOW TO FIND ADDITIONAL RESOURCES 61 

RESOURCES FOR COMMUNITY PROGRAM PLANNING 62 

EDUCATIONAL MATERIALS ABOUT LUPUS 63 

APPENDIX 

MEMBERS OF THE TASK FORCE ON LUPUS IN HIGH RISK 

POPULATIONS 75 



NOTE TO PROGRAM PLANNERS 

If you are concerned about the health of black women, you can make a difference. You can help raise 
awareness in your community about lupus in young black women and encourage them to see a doctor if 
they have symptoms of the disease. This kit presents a variety of ideas you can use to develop 
educational programs on lupus for black women. It is based on successful programs on lupus and other 
health topics that have been carried out throughout the country. 

Lupus is a serious health problem that mainly affects young women. The disease often starts between 
the ages of 15 and 44. People of all races may get lupus. However, black women have three times 
higher rates of incidence (number of new cases), prevalence (total number of cases), and mortality than 
white women. They tend to develop the disease at a younger age than white women and to develop 
more serious complications. As many as 1 in 250 black women will get the disease. 

Lupus is often hard to diagnose because it is similar to many other diseases. Many in the black 
community have never heard of lupus, and it often goes undiagnosed until serious complications arise. 
Lupus may damage the joints, skin, kidneys, lung, heart, or brain. 

Lupus can be serious, but with early detection and proper treatment, most people with lupus can 
lead a normal life. Researchers sponsored by the National Institutes of Health (NIH) are making 
significant progress in lupus. An NIH research team has determined the most effective drug treatment 
for the kidney disease of lupus— and found that this treatment can prevent the most serious kidney 
damage. Other NIH-supported research is helping women with lupus have successful pregnancies. And 
the lead NIH Institute for lupus research, the National Institute of Arthritis and Musculoskeletal and 
Skin Diseases (NIAMS) has just launched a series of research initiatives aimed at determining the 
causes of lupus, more precisely how it damages the organs, and why it is more common in women and 
minorities, particularly African-American women. The NIAMS also will be funding the first two 
Federally funded research centers ever devoted to lupus. 

Until research provides the answers to lupus, the NIAMS also is sponsoring the Task Force on Lupus in 
High Risk Populations. The purpose of the Task Force is to develop education strategies directed to 
patients, the public, and health professionals that may help improve the outcome of lupus in 
populations at high risk of developing the disease. 

The Task Force has determined that the highest priority audience for lupus education efforts is young 
black women. We believe that an effective way to reach these women is through efforts carried out in 
community settings. 

We present this kit of ideas to program planners and others involved in community programs 
and encourage you to help get the word out to young black women about the symptoms of lupus 
and the need to see a doctor if they arise. If you would like assistance or materials, please contact the 
Task Force on Lupus in High Risk Populations, National Institute of Arthritis and Musculoskeletal and 
Skin Diseases, Box AMS, 9000 Rockville Pike, Bethesda, Maryland 20892. We welcome your 
comments and would like to hear about how these ideas and materials are being used and how they 
might be improved. 

Task Force on Lupus in High Risk Populations 



— w 

ABOUT THIS KIT 



What Black Women Should Know About Lupus: Ideas for Community Programs is designed to 
help you plan activities and programs to increase awareness about lupus in black women. This 
kit is part of an ongoing effort to encourage early diagnosis of lupus. We need your help. 

Programs on lupus generated by previous efforts of the Task Force on Lupus in High Risk 
Populations have been carried out in a variety of settings ranging from soup kitchens to churches 
to Federal, state, and local clinics. These efforts are described in "Creative Community 
Programs." (See page 12.) 

Please use the materials in this kit to increase awareness about lupus in your community. 
Activities you plan can inform women about lupus and encourage them to: (1) recognize the 
signs of lupus, (2) see their doctor if they are experiencing signs of lupus, and (3) realize that 
early diagnosis and appropriate medical care will improve the quality of their lives. 

This kit is divided into four sections: 

CG How To Develop a Lupus Awareness Program—provides guidelines for developing a 
successful lupus awareness program, a sample program plan, and a list of activities that 
you can organize for members of your community. 

? How To Work With the Media—provides guidelines for working with the media, public 
service announcements and a cover letter to send to public service directors, a fill-in-the- 
blanks press release, a sample letter to the editor, a sample feature story pitch letter, and a 
sample newsletter article. 

CG How To Use These Camera-Ready Materials— provides instructions for production of 
the following camera-ready materials: a booklet entitled What Black Women Should 
Know About Lupus, a poster, a factsheet about lupus in black women, a checklist on signs 
of lupus, a test of lupus knowledge, a bill stuffer, a bookmark, stationery that can be used 
to send information or letters to media representatives and community leaders, and logos 
that you can use on your own materials. 

5 How To Find Additional Resources— provides the names and addresses of organizations 
that have additional information about lupus and can help you plan activities for your 
community, references to community program planning materials, and references to 
educational materials about lupus. 

In the back pocket of the kit is a popular educational booklet What Black Women Should Know 
About Lupus. The pocket also contains a poster that can be used to increase awareness about the 
signs of lupus, an order form to request additional copies of this kit or the booklet, and a 
response form to return to the Task Force so that we can evaluate the effectiveness of this kit. 



K3— — 

HOW TO DEVELOP A LUPUS 
AWARENESS PROGRAM 



To develop a program plan like the one 
shown on page 9, start by answering the 
following questions. 

Who is your target audience? 

The target audience for this campaign is 
black women between the ages of 15 and 

44. You may want to choose activities that 
will reach various age ranges within the 
target audience. For example, a poster 
contest for students will reach 15- to 18- 
year-olds while brown-bag lunches held at 
various worksites will reach women ages 
20 to 44. 



Objectives 

♦ Increase awareness and knowledge 
of lupus in black women and the 
general public. 

♦• Increase the number of women who 
recognize signs of lupus. 

♦ Increase the number of women who 
seek medical care when experienc- 
ing the signs of lupus. 



What are your objectives? 

You may wish to adopt one or more of the 
objectives listed above. If you decide to 
create your own objectives, make sure you 
set objectives that allow you to measure the 
success of your program. For example, if 



you choose to "increase the number of 
women who recognize the signs of lupus," 
you can measure the success of your 
program by counting the number of 
women who are familiar with the signs 
before and after each activity. If more 
women recognize the signs of lupus after 
participating in one of your program 
activities, the activity can be considered a 
success. 

What messages will you use to 
inform your audience about lupus? 

Messages should be easy to understand and 
support your objectives. If your objective 
is to "increase the number of women who 
recognize the signs of lupus," your 
message should include the signs of lupus. 
Other messages from a sample program 
plan are listed on page 9. 

What materials will help you 
achieve your objectives? 

The materials in this kit are designed to 
help meet the Task Force objectives. Use 
them or change them so they will help you 
reach your target audience. 

Designing materials can be one of the 
activities used to increase awareness about 
lupus. Target audience members can learn 
about lupus while creating posters, 
exhibits, and other materials. 



■CO 



What activities will most effectively 
reach the target audience in your 
community? 

Choose activities that will appeal to the 
people you are trying to reach. Check out 
the ideas listed in "Creative Activities To 
Conduct in Your Community" (page 1 1 i. 

Ask other local groups to participate in the 
activity. For example, it" you would like to 
plan a brown-bag lunch, major employers 
in your community can participate by 
encouraging their employees to attend, 
providing convenient space for the event, 
and donating drinks or dessert. 

How can local groups help you? 

Local groups can participate in activities, 
and/or they max be willing to donate 
volunteer time, supplies. monej . or other 
services. A local printer may be willing to 
print lupus awareness materials free of 
charge. Local clothing merchants ma) lend 
clothes for a fashion show . Schools may 
help organize a poster contest for students. 
A utility company or other business could 
include brief informational material in a 
monthly billing. 

How can the media help you? 

Choose media activities that will foster 
lupus awareness and/or promote the events 
you are planning. Refer to "How To Work 
With the Media" (page 19). 



How can you tell if your program is 
a success? 

Evaluation requires planning. The type of 
evaluation you do will depend on the 
activities and objectives thai you choose. 
To properly assess the effectiveness of 
sour program, you may need to conduct a 
survey before and after acti\ ities. For 
example, it one oi your objectives is to 
"increase the number of women who seek 
medical care when experiencing signs of 
lupus." you max w ish to survey a local 
health clime before and after you 
implement your program. You could find 
out how man} women are aware of the 
signs of lupus and the importance of 
seeking medical care when experiencing 
these signs. II 'more women are aware ol 
lupus alter your program, you have 
succeeded. 

Proper evaluation invokes many steps not 
explained in this kit. Refer to Making 
Health Communications Work: A 
Planner's Guide, published by the National 
Cancer Institute, for a complete description 
of the evaluation process. (See "Resources 
lor Community Program Planning." page 
62, lor information about how to obtain a 
tree copy of this manual.) 



NOTE: If you would like additional information about community program planning, 
please refer to "Resources for Community Program Planning" (page 62). 



ex? 

SAMPLE PROGRAM PLAN 



Target Audience: 

♦ Black women between the ages of 15 and 44. 
Objectives: 

♦ Increase awareness and knowledge of lupus in black women and the general public. 

♦ Increase the number of women who recognize signs of lupus. 

♦ Increase the number of women who seek medical care when experiencing signs 
of lupus. 

Messages: 

♦ Common signs of lupus are: red rash or color change on the face, painful or swollen 
joints, unexplained fever, chest pain with breathing, unusual loss of hair, pale or 
purple fingers or toes from cold or stress, sensitivity to the sun, and low blood count. 

♦ The signs of lupus are more important when they occur together. 

♦ If you have signs of lupus, see your doctor. 

♦ Early diagnosis is important. 

♦ Early diagnosis and appropriate treatment will relieve the signs of lupus and improve 
your life. 

♦ The Lupus Foundation of America (LFA) and The American Lupus Society (TALS) 
have additional information about lupus and provide physician referrals. 

♦ Lupus is a serious disease. 

♦ Lupus is treatable. 

Materials: 

Poster Table tent cards 

Booklet Bill stuffers 

Resource list Radio PSA's 

Other Resources: 



Donated printing from local printers 
Speakers for potluck suppers 



m 



Groups To Involve: 



Businesses: Largest employers of black women in your area. 

Local utility compans . 

Local shopping malls and department stores. 

Organizations: Selected churches and chapters of the LFA and TALS. 

Health Care Providers: Local hospitals with community outreach programs. 

Communit) health centers. 

Community Services; Public libraries. 

Local junior and senior high schools. 

Commi \m A< n\ nil 

♦ Organize pot luck suppers at selected churches. 

♦ Organize brown-bag lunches al selected worksites. 

♦ Distribute lupus awareness materials m libraries, hospitals, and community 

health centers. 

♦ Ask a local utility compain to use bill stutters. 

♦ Hold a lupus poster contest (for students) offering donated prizes. Exhibit entries 
in a mall and later at local schools. 

Mi di \ \< nviTii 

♦ Ask a spokesperson to appear on two call-in shows on black-oriented radio programs 
with formats targeted to black listeners. 

♦ Provide local stations/on-air personalities with the live-announcer copy in this kit. 

E\ mi vriov 

♦ Track the number of materials distributed. 

♦ Track call-in show response. 

♦ Ask health care providers, in advance of your program, to keep track of how many 

patients are asking about the signs of lupus. 

♦ Ask potluck and brown-bag participants to see how many signs of lupus they can list 
alter hearing the presentation. 

♦ Ask local chapters of the LFA and TALS if they are receiving additional requests 
for information. 

♦ Survey schools before and after the poster contest to see how many students are 
familiar with the signs of lupus. 



10 



w 



CREATIVE ACTIVITIES TO CONDUCT 
IN YOUR COMMUNITY 

How can you get the word out about lupus? 

Your organization can do many kinds of activities alone or in cooperation with other groups to 
increase awareness about lupus in black women. The activities listed below will work in a 
variety of community locations. Later in the list we have offered suggestions for specific 
settings. You can change or combine the activities to meet your local needs. 



! Ask your local chapters of the 
Lupus Foundation of America, 
Inc. (LFA) or The American 
Lupus Society (TALS) to help you 
plan programs or seminars for 
your organization. (See "How To 
Find Additional Resources," page 
61.) 

3 Invite a health professional to 
come talk to your group about 
lupus. Tell him or her you want to 
know about symptoms, treatment, 
and research advances. A local 
hospital or the local chapters of 
the LFA or TALS may be able to 
recommend a speaker. 

; Talk to your local hospital to see if 
they have a community health 
education program that could 
include lupus as a topic. 

Hold a breakfast for employers, 
religious leaders, or media repre- 
sentatives, and ask them to co- 
sponsor activities with you. 



Form an African-American outreach 
committee to distribute materials to 
local African- American organiza- 
tions such as fraternities, sororities, 
or civic clubs. 

Publish lupus information in organi- 
zation newsletters or magazines, 
using the reproducible art and 
articles from this kit. Include infor- 
mation about local resources. 

Hold or participate in health fairs at 
community centers, churches, and 
schools. Include an exhibit about 
lupus. 

CO Display or distribute the booklet 
What Black Women Should Know 
About Lupus at your public library. 
Ask the librarians to distribute 
copies, and suggest that they hang 
the poster and place materials on 
display. 

DO Contact recreation centers about 
putting on programs or distributing 
materials. 



11 



•CO 



Creative Community 


Programs 


Examples of creative approaches successfully used 


by other communities include: 


In Florida, a retired Episcopalian 


A soup kitchen in Detroit used 


minister held seminars and meet- 


slides to create a video that has 


ings. He encouraged predominantly 


been shown to more than 30,000 


hlack congregations in the state to 


women. In addition, it distrib- 


declare a 'Lupus Awareness Sun- 


uted copies of the booklet What 


day.' asking clergy to talk about 


Black Women Should Know 


lupus and to reproduce the booklet 


About Lupus. 


What Black Women Should Know- 




About Lupus in the Sunday church 
bulletin. Many congregations chose 
a Sunday during October. National 
Lupus Awareness Month. 


The Bronx, New York, chapter 
of the LFA, under the direction 
of an ordained minister, held 
meetings and seminars at 




churches with predominant!) 


The New York chapter of the Lupus 


black congregations and distrib- 


Foundation of America, Inc. (LFA) 


uted material at da\ care centers 


held health fairs at community 


in the Bronx. In addition, this 


centers, churches with predomi- 


chapter plans to distribute sev- 


nantly black congregations, and 


eral thousand copies of the 


high schools, including a writing 


booklet 11 hat Black Women 


competition at one school where a 


Should Know About Lupus at 


teacher has lupus. In addition, the 


the national meeting of the 


chapter placed posters about lupus 


Baptist Church to be held in 


on subways and buses. 


New York City's Madison 




Square Garden. 


The United Methodist Church 




(UMC) is developing a model 


The Atlanta chapter of the LFA 


program offering a variety of 


conducted seminars about lupus 


activities. It will be tested in 15 


at Historically Black Colleges 


churches with predominantly black 


and Universities, such as 


congregations in the Baltimore/ 


Spellman College and 


Washington area. If successful, the 


Morehouse University in At- 


UMC will distribute the program to 


lanta, and distributed copies of 


its churches throughout the United 


the booklet. 


States. 





12 



w 



Ask a sponsor to imprint refrigera- 
tor magnets with the signs of lupus 
that you can give away or sell at 
events, or give as gifts for volun- 
teers. 

1 Create bookmarks that list the signs 
of lupus. 

1 Conduct a lupus awareness bake 
sale. You can place posters listing 
the signs of lupus behind the sale 
tables, distribute materials about 
lupus in minority populations, and 
borrow a videotape about lupus 
from your local library to play 
during the sale. 



Organize a 1-day boat cruise for 
lupus awareness. The signs of lupus 
could be printed on cruise tickets. 
Materials about lupus could be 
distributed upon boarding. Volun- 
teers from a local chapter of the 
LFA or TALS could arrange a short 
presentation during lunch or dinner. 

Hold a lupus awareness "potluck 
supper." Invite a lupus patient and/ 
or expert to talk about lupus in 
black women. 



Hospitals or Clinics 



Place posters and materials about 
lupus and black women in lobbies 
and waiting areas. 

1 Ask lupus experts to present at 
hospital grand rounds devoted to 
the topic of lupus in black women. 



Include an exhibit and materials 
about lupus at your next health fair. 

Arrange for a Continuing Medical 
Education (CME) course about 
lupus to be given for physicians in 
your area. 



Schools or Youth Programs 



J Ask high school clubs or art classes 
to design and construct banners or 
portable exhibits for use at commu- 
nity events. Display the exhibit at 
schools, community centers, 
churches, health centers, and 
offices. 



Hold a lupus poster contest (for 
students) offering donated prizes. 
Exhibit entries in a mall, commu- 
nity center, library, local airport, or 
other public place. 

Hold a "rap" contest about lupus in 
minorities. Local radio or TV 
stations can help promote the 
contest and play the winning 
entries. 



13 



m 



Invite local churches to sponsor a 
lupus awareness dance, bringing 
youth from the area together at one 
church. It could be a "danceathon" 
to raise money as well as aware- 
ness. Combine the dance with the 
rap contest by having rappers 
judged by applause. 

Ask local Parent-Teacher Associa- 
tions (PTA's) or Parent- Teacher 
Student Associations i PI S As i to 



distribute lupus awareness materials 
at meetings and events. 

Organize a lupus awareness car 
wash. You can place posters listing 
the signs of lupus nearby and have 
a table where people can pick up 
other materials about lupus in 
minority populations while they are 
waiting lor their car. 






SPECIAL EVENTS CALENDAR 

Link local events with national events. Take advantage of important local dates and 
communitN events, including parades, count) lairs, health lairs, picnics, family reunions, 
block parties, high school reunions, and sports competitions. 



Black 1 listory Month 

National Women's Histor) Month 

Mother's Day 

National Council of Negro Women's Black Famih Weekend 

National Lupus Awareness Month 



February 

March 

May 

Summer/Fall 

October 



WoKKslll -x 



Place posters about lupus and black 
women on office or corridor bulle- 
tin boards. 

Place information about lupus in 
black women on electronic bulletin 
boards. 

Reprint and distribute the factsheets 
and artwork to coworkers. 



Hold a brown-bag lunch about 
lupus. [n\ ite a lupus patient and her 
doctor to discuss their experiences. 
Borrow a videotape about lupus 
from your local library to show 
during the brown-bag lunch. 

Ask employers/businesses to print 
and display table tent cards using 
the reproducible art from this kit or 
to use payroll or bill stuffers (espe- 
cially for utility company, bank, 
and credit card statements). 



14 



»• 



Ask local businesses if they have 
printing capabilities and can reprint 
materials from this kit. (Offer to 
acknowledge their donation on the 
materials.) 



Ask unions to distribute lupus 
awareness materials to members. 



Churches 



Encourage clergy and lay leaders to 
promote lupus awareness and its 
potential effects on black families. 
Ask churches to include articles in 
their weekly bulletin or to distribute 
brochures after services or social 
events. 



Consider the activities in the first 
part of this list. Many of these ideas 
are ideal for the church setting. 
Also consider the activities de- 
scribed in "Creative Community 
Programs." (See page 12.) 



Retail Outlets 



1 Hold a health fair with other orga- 
nizations at a shopping mall or 
office building. Ask the local 
chapter of the LFA or TALS for 
information about how to get things 
started. 



Print Media 



Ask merchants to display posters 
and table tent cards, use bag 
stuffers for customers, or include a 
lupus awareness message on store 
receipts. Encourage them to distrib- 
ute factsheets and booklets. 



Send newspapers and newsletters 
copy for public service print ads, 
such as the Signs of Lupus bill 
stuffer/bookmark. Ask them to run 
an article or editorial. 

Write a news release, op-ed piece, 
or letter to the editor to announce 
your new program. (See "How To 
Work With the Media," page 19.) 

1 Notify the calendar editors of local 
newspapers about the location, 
date, and time of your special 
event. 



1 Submit some ideas for local stories 
about lupus in black women to 
newspaper editors and to freelance 
health writers, and offer your group 
as an information source. You may 
want to have a lupus patient avail- 
able for interviews to discuss the 
importance of early detection. 

Distribute the Health Watch article 
(see page 30) to smaller daily and 
weekly newspapers, "shoppers," 
and community organization 
publications. They almost always 
can use more material. 



15 



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Bromx :ast Mi di a 



Provide local stations/on-air per- 
sonalities with PSA's. (Sec samples 
on pages 23-25.) 

Ask a cable TV station or regular 
program hosl to help you produce a 

program about lupus. After the 
broadcast, use the videotape in 
community programs. 

Meet with public sen ice directors 
oi television stations, including 
cable tele\ ision, to discuss the 
importance of reaching their v iew - 
cis w ith earl) detection informa 
lion. Ask lor help in producing 
local public sen Ice messages using 
the earl) detection theme. 

Arrange tor a lupus expert or a 
spokesperson lor your program to 
appear on a television or radio talk 
show . 



Ask producers ol radio call-in 
shows and television public affairs 
programming to feature lupus, 
oiler to provide background 
information on lupus, sample 
questions and answers, and a lupus 
expert or patient to interview. 

Arrange to have your activ ities 

listed in a "communit\ calendar" 
spot aired b) telc\ ision stations or 
cable tele\ ision outlets. 

Encourage producers of television 
"magazine" shows to produce a 
segment about the importance ol 
earl) detection of lupus. 

Work with public affairs directors 

to develop on-air editorials about 
lupus and black women. 



Activities for Mother's I)a\ 

<3r Ask an alumni association, sororit) . or auxiliary of a local medical 
SOCiet) to sponsor a mother-daughter brunch around the topic of "What 
Mothers and Daughters Need To Know About Lupus." 

<3f Stage a fashion show tor mothers and daughters. Ask local clothing 
stores to lend outfits to be modeled by mothers or daughters. The store 
gets free advertising at the fashion show and in all promotional materials. 
such as flyers, etc. Mothers and daughters enjoy modeling the clothes. 
You can invite a speaker to talk about lupus, play a videotape, or just 
distribute materials that describe lupus signs. You also may ask the store 
to display a lupus poster. 

<5r Organize a walkathon for lupus. Mothers and daughters or entire families 
can walk together. 



16 



«. 



HOW TO WORK WITH THE MEDIA 



The local media is always interested in stories with a local angle. They provide numerous 
opportunities to inform young black women about lupus. 

This section tells you how to use the materials in this kit to get maximum media coverage of 
your local efforts. By working closely with radio and television stations, newspapers, 
newsletters, and other publications, you can really "get the word out" about lupus. 

Develop a List 



First, develop— or update— your list of local 
media contacts. If you have never done this 
before, start by consulting a media 
directory that lists reporters in your area. 
Bacon s Publicity Checker is a standard 
media directory and is available at most 
public libraries (referenced in "Resources 
for Community Program Planning," page 
62). Call selected contacts to confirm that 
the information is up to date. Also, 
regularly scan newspapers and monitor 
radio and TV shows to learn the names of 
reporters who cover health topics. 

When you call or visit the people on your 
media list, ask about deadlines, special 
interests, and informational needs. Add this 
information to your list. Try to include 
representatives from: 

♦ Radio stations. 

♦ Television stations, including local 
network affiliates, independent 
stations, and cable outlets. 



♦ Regional and national news services 
such as the nearest bureau of the 
Associated Press. 

♦ Daily and weekly newspapers. 

♦ Community advertisers' publications 
("shoppers"). 

♦ Publications of civic, service, 
religious, fraternal, business, and 
health professional organizations. 

Important contacts will include: 
assignment editors, health and news 
reporters assigned to cover health and local 
issues, and television public affairs 
directors. In addition, business-page editors 
can help you publicize worksite activities, 
and "calendar" editors can announce your 
events. Talk show hosts and/or their 
producers also are good media contacts 
when arranging interviews. 



19 



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I si mi Media Materials in This Kii 



This section contains the following: 



Press Releases 



♦ 20-, 30-, and 60-second public 
service announcements (PSA's) for 
use by radio announcers. 

♦ A cover letter to public sen ice 
directors to accompany the PSA's. 

♦ A "fiU-in-the-blanks" press release. 

♦ A sample letter to the editor. 

♦ A sample feature stor> pitch letter. 

♦ A sample newsletter article--//<<///// 
Watch: Black Women and Lupus. 

Adapt the press release and PS \\ lo meet 
your needs. Add other kit materials, such 
as the factsheet, the "health watch" article. 
and the booklet, as well as information 
about your own organization, and you have 
an informative mailing lor the Ideal media. 
Please refer to "Creative Activities To 
Conduct in Your Community " i page 1 1 ) 
for additional ideas about how to work 
with the media. 

Public Service Announcements (PSA *S) 

Create new PSA's about the special 
programs or local events that your 
organization is sponsoring. See the PSA's 
and cover letter provided on pages 23-25 
for ideas. Select spots appropriate to each 
radio station. Rock stations are interested 
in announcements aimed at teenagers. 
Radio stations programming jazz, classical 
music, or talk shows are interested in 
announcements aimed at adults. If using 
the PSA's to promote a local event, mail or 
deliver them 2 to 4 weeks in advance. 



Press releases are standard publicity tools, 
and reporters and editors receive many on 
a weekly basis. To draw attention to your 
release, add local information and retype it 

double spaced (or one -and-onc half 
spaces), using only one side of your 
letterhead. It possible, keep it to no more 
than two pages. Send the press release to 
health reporters ol newspapers, local 
newsletters, and radio and TV stations at 

least I week before your event. 

The headline and the lead sentence should 
"grab" the reader. Focus on what is 
"new ." an upcoming e\ enl | w ith date I. or a 
connection w ith a "hot" topic or other 
recent news stor) to create immediate 
interest. 



Keys to Success 

♦ Keep letters to the editor and editorials 
short. ()p-ed pieces can be longer. 

♦ Make sure your arguments are logical 
and your tone is persuasive. 

♦ Provide background information, 

copies of recent new s releases, or other 
stories about your program to con- 
vince editors that you are knowledge- 
able about the subject, a credible 
source, and that your editorial or op-ed 
is important to the communit> . 

♦ Ask for and follow style guidelines, 
and deliver your piece on or before the 
paper's deadline. 



20 



■C3 



Editorials, Op-Eds, and Letters to the 
Editor 

The editorial section is one of the most 
widely read parts of the paper. This is a 
good place to express a viewpoint or 
announce new facilities or services. 
Editorial pages often include letters to the 
editor and op-eds. 



factsheet, and "health watch" article. If a 
personal meeting is not possible, send the 
information and follow up with a telephone 
call. Ask directly whether the reporter is 
going to do a story on your subject. If yes, 
try to get a specific timeframe so you can 
look for the story. 



Op-eds are articles, usually 500 to 800 
words long, that carry an author's byline. 
They appear on the page opposite the 
editorial page and present an expert point 
of view on a specific topic. For example, 
an op-ed might argue for greater efforts in 
your community to get young black 
women with lupus diagnosed sooner. 

To place an editorial or op-ed piece, 
address your article to the editorial page 
editor, or, in a smaller newspaper, the 
editor-in-chief. At television stations, 
which sometimes deliver editorials on 
important local issues, call the editorial 
writer or general manager. 

Feature Stories 

Call the health reporter or a feature writer 
to schedule an appointment. It is important 
that you already have the "hook" for the 
story or news item. For example, the fact 
that lupus is three times more common in 
black women than in white women is a 
hook. If it sparks interest, describe the 
signs of lupus and explain the importance 
of early diagnosis. Take along a package of 
background information about lupus, 
including the press release, booklet, 



Tips for Television 

/ Avoid clothes with checks, stripes, and 
patterns. Select medium tone colors in 
clothing (not too dark or too bright). 

/ Avoid solid white blouses and shirts. 
Medium to light shades give the best 
effect. 

Avoid flashy accessories and jewelry that 
will catch the light. Don't wear glasses that 
turn dark in sunlight; they will darken 
under the strong TV lights. 

/ Resist the temptation to bend into the 
microphone; sit or stand up straight. Don't 
fold your arms. 

/ Keep your eyes on the interviewer. Do not 
look at the camera or studio monitor. 

■/ Use natural gestures, but avoid rapid hand 
movements that are difficult for the camera 
to follow. 

/ Never assume you are off camera just 
because someone else is talking; you may 
still be in range. 



21 



■CO 



Identify Spokespersons Who will 
Work With Yoi 

Select one or more media spokespersons. 
These individuals should be vers 
knowledgeable about lupus. One 
possibility is a local rheumatologist who 
treats patients with the disease and keeps 
up to date on new developments in the 
field. Your spokespersons also should be 
available and willing to respond to calls 
from the media. If an interview will be 
aired on TV or radio, the spokesperson 
should be articulate and able to respond to 
questions in terms understood b\ a la) 
audience. The local chapter of the Lupus 
Foundation of America. Inc. (LFA) or The 
American Lupus Societ} (L\LSima\ be 
able to help you identify a spokesperson. 



KM I W 

Once you have identified a spokesperson, 
contact a newspaper reporter or a talk show 
host. Give the interviewer background 

information about the spokesperson, 
including a biography that highlights his or 
her recent experience and connection with 
lupus. Also provide background 
information about lupus that answers a few 
suggested questions. 

Help your spokesperson prepare for the 
interview. Let him/her know when and 
where the interview will be held. Review 
how the person would handle controversial 
or delicate questions, if they were asked. 

Radio interviews can be conducted by 
phone. If the interview will be televised, 
give the spokesperson information about 
how to make the most of a TV appearance. 
(See "Tips for Television," page 21.) 



Always S\> "Thank Yoi " 

Send a thank-you letter to reporters, 
interviewers, and interviewees who help 
you, regardless of how brief the mention. 



Some General Tips on Media Contacts 

Emphasize what is unique and 
compelling about the campaign when 
talking to reporters and others about 
your aeti\ ities. The information in the 
enclosed factsheel will help you think 
ahead about questions that may be 
asked. 

♦ Give reporters enough lead time to 
cover your story— about I week for a 
press release and 2 weeks tor a feature 
story. Follow up with a phone call to 
s^c if the) received your mailing. 

♦ Make your follow up calls brief and 
concise. Never call around deadline 
times, [fyou aren't sure when 
deadlines are. simpl) ask if the 

reporter is on deadline and when you 
should call back. 

♦ It you send your materials to more than 
one person in an organization, make 
sure each recipient knows. 

♦ One or 2 days before a special event, 
contact the local bureau of a national 
news service to have the event 
publicized in the "daybook." The 
daybook is a calendar listing checked 
daily by print and electronic media 
outlets. Look for Bacon's Publicity 
Checker in your library' for the nearest 
bureau of the Associated Press, United 
Press International, or Reuters. Ltd. 
These are the three major news 
services used by daily newspapers. 



22 



— — CO 

SAMPLE PUBLIC SERVICE 
ANNOUNCEMENT 



cvg CVO O^O 

WKJ WKJ W 

LUPUS? 

Live Announcer Radio 
:20 Version 

ANNCR: (Uses serious, yet dramatic inflections in voice) 

Lupus is a serious disease that makes a lot of young women 
sick—but it doesn't have to. 

ANNCR: (Returns to normal voice) 

Lupus is hard to recognize because the symptoms differ from one 
person to the next. 

The good news is that lupus can be treated. 

Learn more about lupus .... See your doctor and contact your 
local chapter of the Lupus Foundation of America today. 



23 



«■ 



SAMPLE PUBLIC SERVICE 
ANNOUNCEMENT 



ra ra ra 

LUPUS? 

Live Announcer Radio 
:30 Version 

ANNCR: (Uses serious, yet dramatic infla tions in vou e) 

Lupus is a serious disease that makes a lot of young women 
sick—but it doesn't have to. 

ANNCR: < Returns to normal von e) 

In lupus, something goes wrong with the body's immune system so 
that it damages the body's own tissues. The causes of lupus are 
unknown. We do know that lupus is not catching ... it's not cancer 
. . . it's not AIDS . . . and there are treatments. 

Lupus is hard to recognize because the symptoms differ from one 
person to the next. 

The good news is that lupus can be treated. 

Learn more about lupus .... See your doctor and contact your 
local chapter of the Lupus Foundation of America today. 



24 



— eg— 

SAMPLE PUBLIC SERVICE 
ANNOUNCEMENT 



cvo cvo cvo 

I/O I/O L/\J 

LUPUS? 

Live Announcer Radio 

:60 Version 

ANNCR: (Uses serious, yet dramatic inflections in voice) 

There's a disease out there that's making a lot of young women 
sick-but it doesn't have to . . . it's LUPUS. 

ANNCR: (Returns to normal voice) 

In lupus, something goes wrong with the body's immune system so that the 
body damages its own tissues. What causes lupus is still unknown. What we do 
know is that lupus is not catching ... it's not cancer ... it's not AIDS . . . and 
there are treatments. 

Lupus is hard to recognize because the signs of lupus differ from one person to 
the next. Learn the signs of lupus: 

♦ Red rash or color change on face, often in the shape of a butterfly, across 
the bridge of the nose and the cheeks. 

♦ Painful or swollen joints. 

♦ Unexplained fever. 

♦ Chest pain with breathing. 

♦ Unusual hair loss. 

♦ Pale or purple fingers or toes from cold or stress. 
4- Sensitivity to the sun. 

♦ Low blood count. 

The good news is that lupus can be treated by your doctor. If you have some of 
these signs and they occur together, help is available. See your doctor and start 
feeling better today. 

This message is brought to you by this station and the Task Force on Lupus in 
High Risk Populations of the National Institutes of Health. 



25 



SAMPLE LETTER TO PUBLIC 
SERVICE DIRECTOR 



Dear Public Service Director: 

The enclosed PSA's arc about lupus— a scrums, yel little-known disease thai 
mainly affects young women. People of all races ma) develop lupus. However, 
lupus is nine times more common in women than men and three limes more 
common in black women than while women. The causes of lupus are unknown. 
What is known is that lupus can affect man) parts ot the body, including the skm. 
kidneys, lumjs. heart, or the brain. In lupus, the body's immune system sometimes 
becomes overactive and attacks health) tissues. 

While there is no cure lor lupus, the good news is that great advances have been 
made in its treatment. Because ol earl) diagnosis and treatment, women with 
lupus arc living longer and more productive lives. It is lor this reason that ( Name 
of Organization ) is planning acti\ Ities to inform women about lupus. 

We need your help to raise the level ol awareness o\ lupus and its treatments. 
Please use these 20-, 30-, and 60-second live announcer scripts as often as possible 
so that your listeners will know the signs of lupus and seek a doctor for treatment. 

If you have questions or recommendations, please contact me by writing 
( Organization Address and Phono 



Thank you for your assistance. 



Sincerely. 



Director of Orsanization 



26 



■m 



FILL-IN-THE-BLANKS PRESS 
RELEASE 



FOR IMMEDIATE RELEASE 
Date 



CONTACT: 



Name 

Telephone Number 



( Organization ) has joined a nationwide campaign to raise awareness of 
lupus and its signs among black women. 

The campaign, "What Black Women Should Know About Lupus," is 
intended to raise awareness of lupus and its signs among black women and 
encourage them to see their doctor if they have signs of the disease, said ( Name ) 
of ( Organization ). 

"Many in the black community have never heard of lupus, and it often 
goes undiagnosed until serious complications arise," said ( Local Physician ). "If 
left untreated, the disease may damage the joints, skin, kidneys, lungs, heart, or 
brain." ( Local Physician ) added that with the correct medicine, and by taking care 
of themselves, most lupus patients can hold a job, have children, and lead a full 
life. 

The National Institute of Arthritis and Musculoskeletal and Skin 
Diseases (NIAMS), a part of the National Institutes of Health, is urging groups to 
organize events and programs that will inform black women about lupus. In many 
cities, organizations are expected to sponsor special events and distribute material 
at worksites, churches, and other community settings. Locally, ( Name ) said 
activities will include ( List Activities ). 

The NIAMS believes that women who think they have lupus should be 
examined by a doctor and tested for the disease. Lupus is a serious health problem 
that mainly affects young women. Although people of all races may get lupus, it 
has a three times higher incidence, prevalence, and mortality in black women than 
in white women. As many as 1 in 250 black women will develop lupus. 



27 



■w 



(SAMPLE LETTER TO THE EDITOR) 

WHY BLACK WOMEN NEED TO KNOW 
ABOUT LUPUS 

Dear Editor: 

Lupus is a serious health problem thai maml\ affects young women. The disease 
often starts between the ages of 15 and 44. Although people of all races may get 
lupus, it is three times more common in black women than in white women. As 
many as 1 in ever) 250 black women w Ml gel this disease. Currently, blaek 
women with systemic lupus have a lower hie expectancy than white women with 
the same disease. 

Lupus can affect man) s) stems of the body, including the heart, lungs, kidneys, 
and central nervous system. The bod) *s immune system sometimes becomes 
overactive and attacks health) tissues. Earl) diagnosis is the best defense against 

lupus. 

Lupus is difficult to diagnose and is often mistaken for other diseases. 
Unfortunately, many women who have lupus are not diagnosed until serious 
complications occur. Diagnosis is based on an accurate patient histor) and 
laboratory tests. Therefore, it is important lor women to know and provide their 
own complete medical history, especiall) if the) see a different physician each 
time they require medical attention. 

The National Institute of Arthritis and Musculoskeletal and Skin Diseases 
(NIAMS), a part of the National Institutes of Health, urges groups to organize 
events and programs that will inform blaek women everywhere about lupus. The 
( Name of Local Organization ) is planning ( Event ) on ( Date(s) ) to raise awareness 
of lupus and its signs in the black community. The goal is to encourage black 
women to see their doctor if they have signs of the disease. We hope that, armed 
with knowledge about lupus, black women will be able to fight the disease and 
increase their life expectancy. 

If you would like additional information about lupus, call or write to: (Please fill 
in the name of your organization, or you may list the organizations from the 
resource list in this kit, page 61.) 

Sincerely, 



28 



m 



SAMPLE FEATURE STORY PITCH 
LETTER 



Dear 



Lupus is a serious health problem that mainly affects young women and 
especially affects black women. The disease often starts between the ages of 15 
and 44. Although people of all races may get lupus, it is three times more 
common in black women than in white women. As many as 1 in 250 black 
women will get the disease. 

Lupus is difficult to diagnose and often is mistaken for other diseases. Frequently, 
people who have lupus are not diagnosed until serious complications occur. One 
example is the story of who lives in the area. 

(Describe story of local woman who was diagnosed after serious complications— 
or had difficulty obtaining an accurate diagnosis.) 

The National Institute of Arthritis and Musculoskeletal and Skin Diseases 
(NIAMS), a part of the National Institutes of Health, urges groups to organize 
events and programs that will inform black women about lupus. We enclose 
additional information about lupus and the importance of early diagnosis. Please 
consider joining this national awareness effort with a local angle or feature story 
about lupus. ( Person's Name ) at the ( Name of Your Organization ) will be glad to 
assist you by arranging interviews with one or more women who have lupus, with 
local physicians, and other key experts. 

Thank you for taking the time to consider this important health issue. We look 
forward to talking with you soon. 

Sincerely, 



(NOTE: Local chapters of the Lupus Foundation of America, Inc. or The 
American Lupus Society may be able to help you locate physicians, experts, and 
patients who are willing to be interviewed.) 



29 



w 



HEALTH WATCH: BLACK WOMEN AND LUPUS 



Did you know that lupus is a disease that 
occurs more frequently in young black 
women than in any other group? As many 
as 1 in 250 black women will get the 
disease. Lupus can be serious, but with 
early detection and proper treatment, most 
people with lupus can lead a normal lite. 

Considering these tacts, n is important that 
black Americans, particularly young black 
women, know about lupus, its signs, and its 
treatment. 



♦ Red rash or color change on the 
lace, often in the shape of a 
butterfl) . across the bridge of the 
nose and the cheeks. 

♦ Painful or swollen joints. 

♦ Unexplained lever. 

♦ Chest pain with breathing. 

♦ I nusual loss of hair. 

♦ Pale or purple lingers or toes from 
cold or stress. 

♦ Sensith it) to the sun. 

♦ Low blood count. 



Lupus is a disease that can affect main 
parts of the body. In lupus, something goes 
wrong with the bod) 's immune system. 
The immune system sometimes becomes 
overactive and attacks health) tissues. 

There are three types of lupus. The most 
serious ol these is systemic lupus 
erythematosus, which nia\ harm the skin. 
joints, kidneys, brain, lungs, and heart. 
Discoid or cutaneous lupus main!) affects 
the skin. Drug-induced lupus is caused b) a 
small number of prescription medications 
and usually goes away when the 
medication is stopped. 

How can you tell if you or someone you 
know has lupus? The signs o\ lupus differ 
from one person to another. Some people 
have many signs of the disease. Others 
have just a few. The common signs of 
lupus are: 



These signs are more important when 
they occur together. 

Onl) a doctor can diagnose lupus. If you 
think you or someone you know has lupus, 
see a doctor right away. A doctor or nurse 
will talk to you and take a history of your 
health problems. The doctor will perform 
an examination and test for the disease. 

The cause o\ lupus is unknown. However, 
scientists have learned a great deal about 
lupus and are stud) ing new ways to treat 
and, hopefully, prevent the disease. 

FOR MORE INFORMATION, call the 
Lupus Foundation of America. Inc. at 
(800)558-0121 or The American Lupus 
Society at (800) 331-1802. or write to the 
Task Force on Lupus in High Risk 
Populations. National Institute of Arthritis 
and Musculoskeletal and Skin Diseases, 
Box AMS, 9000 Rockville Pike, Bethesda, 
Maryland 20892. 



m 



HOW TO USE THESE CAMERA-READY 
MATERIALS 



Materials in this section have been 
designed to be reproduced or adapted to 
your needs. The following camera-ready 
materials are included: 

♦ Booklet. 
4- Poster. 

♦ Factsheet. 

♦ Checklist on signs of lupus. 
4 Test of lupus knowledge. 
4- Bill stuffer/bookmark. 

4 Stationery. 
4- Logos. 

The kit has no copyright, so you may copy 
these materials without permission. 
Consider using your organization's logo, 
name, address, and telephone number on 
these easy-to-copy materials. Use them in a 
variety of ways. 

"3° Handouts at health fairs, events, 
presentations, and meetings. 

"^ Inserts in mailings or paycheck 
envelopes. 



■^ Copy for newsletters. 

"®" Bulletin board notices. 

c®" Giveaways at hospitals and clinics. 

Note: For additional ideas, see "Creative 
Activities To Conduct in Your 
Community," pages 11 to 16. 

If you do not have the equipment to 
duplicate materials, you may need to 
contact a printer. Printers' prices for 
similar work may vary depending on 
arrangements made. Selection of a printer 
depends on a number of considerations- 
meeting your deadline, budget, and quality 
needs. Before contacting the printer for 
estimates on reproduction costs, determine 
the size, as well as the number of copies 
needed, of each item; select color and type 
of paper; and select a due date for delivery 
of your copies. Be sure to determine the 
level of reproduction quality and discuss 
any special requirements. 



33 



■w 



Instructions for Prodk iion 



The booklet "What Black Women Should 
Know About Lupus" 

This product should be copied onto paper 
that is 8 1/2- by 1 1 -inches. The artwork 
pieces on pages 35 to 46 are designed to 
back each other up and should be copied 
double-sided. Then, copies should be 
folded in half and saddle stitched (stapled 
in the center) to create a booklet that is 
4 1/4 inches wide and 5 1/2 inches high. 
II you would like a replica o( the booklet 
found in the back pocket of this kit. please 
give the printer the following specifications: 

Size: Enlarge to 9 1/4 \ 12 inches 

Cover stock: 8()# litho-coated paper 

Color: PMS 299 C and black 

Cover text: reverse white 

Cover art: black 

Text stock: 60# opaque white paper 

The poster "What Black Women Should 
Know About Lupus" 

This product can be copied onto 8 1/2- by 
1 1-inch brightly colored paper. The poster 
found in the back pocket of this kit is 
printed on 8()# litho-coated paper. The 
color used is PMS 299 C. The text is 
reverse white and the artwork is printed in 
black. 

The factsheet "Facts About Lupus and 
Black Women" 

This product is double-sided and should be 
copied onto 8 1/2- by 1 1-inch paper. The 
factsheet may get more attention if printed 
on colored paper. 



"Checklist on Signs of Lupus" 

The checklist can be distributed at 
activities or reprinted in newsletter or 
newspaper articles. It is designed to be a 
4- by 7-inch card. Copy the checklist onto 
heav) stock paper. Ask the printer to cut 
the copies for you. Crop lines are 
pro\ ided for this purpose. 

/ of knowb >(> ) on Know 

h About Lupu 

Camera-read) artwork for Do )<>u Know 
Enough \hi>i<! Lupus.' is provided in two 

formats. The first design is for use as a 
table tent card. It should be copied onto 8 
1/2- h\ I I -inch heaw stock paper and 
folded in the middle. Tell the printer thai 
the paper must be thick enough to stand 
up on its own. Also, ask the printer to 
fold the tent cauls for you. The second 
design can be distributed as a handout or 
reprinted in newsletters. 

Bill sin okmark "Sii^ns of Lupus" 

This item can be used as a bill stuffer or 
as a bookmark. The finished product will 
be 3 inches wide and 7 inches long. The 
printer can fit three copies on each piece 
of paper. This will save paper and money. 
Ask the printer to cut the copies for you. 

If you plan to use bill stuffers. copy the 
artwork onto plain or colored paper. If 
you would like bookmarks, copy the 
artwork onto a colorful, heavy stock paper 
(perhaps glossy coated). In addition, you 
can send a copy of Signs of Lupus to 
newspapers and newsletters for use as a 
public service print ad. 



34 



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What Black Women Should 

Know About Lupus 



Common Signs of Systemic Lupus 

• Red rash or color change on the face, 
often in the shape of a butterfly across 
the bridge of the nose and the cheeks 

• Painful or swollen joints 

• Unexplained fever 

• Chest pain with breathing 

• Unusual loss of hair 

• Pale or purple fingers or toes from cold 
or stress 

• Sensitivity to the sun 

• Low blood count 

These signs are more important when 
they occur together. 

For further information on lupus, see your doctor or 
health clinic and contact your local chapter of the 
following organizations: 

Lupus Foundation of America, Inc. 

4 Research Place 

Suite 800 

Rockville, Maryland 20850-3226 

(310) 670-9292 

(800) 558-0121 

The American Lupus Society 

3914 Del Amo Blvd. 

Suite 922 

Torrance, California 90503 

(310)542-8891 

(800)331-1802 




U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Public Health Service National Institutes of Health 

Task Force on Lupus in High Risk Populations 



03 

FACTS ABOUT LUPUS AND BLACK 
WOMEN 



Who Gets Lupus? 

4 Lupus is a serious health problem 
that mainly affects young women. 
The disease often starts between the 
ages of 15 and 44. People of all 
races may get lupus. However, 
lupus is three times more common 
in black women than in white 
women. As many as 1 in 250 black 
women will get the disease. 

4- You cannot catch lupus from 
someone else. You cannot give 
lupus to someone else. Lupus is not 
a form of cancer. It is not AIDS. 

What Is Lupus? 

4- In lupus, the body produces abnor- 
mal antibodies that react against the 
patient's own tissues. Lupus may 
affect the joints, the skin, the 
kidneys, the lungs, the heart, or the 
brain. 

There Are Three Types of Lupus: 

4 Systemic lupus erythematosus, the 
most serious form of lupus, which 
may harm the skin, joints, kidneys, 
brain, lungs, and heart. 

♦ Lupus that mainly affects the skin 
(discoid or cutaneous lupus). 

4- Lupus caused by a small number of 
prescription medications (drug- 
induced lupus), which goes away 
when the medication is stopped. 



Common Signs of Systemic Lupus: 

4 Red rash or color change on the 
face, often in the shape of a butter- 
fly, across the bridge of the nose 
and the cheeks. 

♦ Painful or swollen joints. 

♦ Unexplained fever. 

4 Chest pain with breathing. 

4 Unusual loss of hair. 

4- Pale or purple fingers or toes from 
cold or stress. 

4- Sensitivity to the sun. 

4- Low blood count. 

These signs are more important when 
they occur together. 

Other signs of lupus can include mouth 
sores, unexplained fits or convulsions, 
hallucinations, depression, repeated 
miscarriages, and unexplained kidney 
problems. 

Signs of lupus tend to come and go. There 
are times when the disease quiets down or 
goes into remission. At other times lupus 
flares up or becomes active. 



ej 



Diagnosis and Treatment: 

♦ Only a doctor can diagnose lupus. 
If you think you or someone you 
know has lupus, see a doctor right 
away. A doctor or nurse will talk to 
you and take a history of your 
health problems. The doctor will 
perform an examination and lost for 
Ilk- disease. 

♦ The doctor ma\ prescribe a variety 
of medications for the lupus patient. 

♦ II' you have lupus, you ma\ need 
extra rest. Trj to avoid stressful 
situations, and staj out of the sun. 
Some people should avoid sunlight 
because it maj worsen the disease. 



4- We do not know what causes lupus, 
but scientists arc looking lor a cure. 
Scientists also are improving ways 
to detect and treat the disease. 

For More Information: 

♦ Call the Lupus Foundation of 
America, Inc. at (800) 558-0121 or 
The American Lupus Societ) at 
(800) 331-1802, or write to the 
Task Force on Lupus in High 
Risk Populations. National Insti- 
tute ot \rthi His and Musculoskel- 
etal and Skin Diseases. Box WIS. 
9000 Rockville Pike. Bethesda, 
Man land 20892. 



Prepared bv the 

NIAMS Task Force on Lupus in High Risk Populations 

National Institute of \rthritis and 

Musculoskeletal and Skin Diseases 



NIAMS. a part of the National Institutes of Health, leads and 
coordinates the Federal biomedical research efforts in lupus. 



CHECKLIST ON SIGNS OF LUPUS 

Use this page to make notes to take to your 
doctor. 

□ Red rash or color change on face, 
often in the shape of a butterfly, 
across the bridge of the nose and the 
cheeks. 

□ Painful or swollen joints. 

□ Unexplained fever. 

O Chest pain with breathing. 

□ Unusual loss of hair. 

□ Pale or purple fingers or toes from 
cold or stress. 

□ Sensitivity to the sun. 

□ Low blood count. 

These signs are more important when 
they occur together. 

Notes: 



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i 



fold here 



IK) YOU KNOW ENOUGH ABOUT LUPUS? 



As main as l in 250 black women will develop lupus. Do you know enough about lupus to protect yourself and 
your friends from the complications of this disease? \nswer the following questions and read the answers 

provided on the back to learn more N(i| 

true False Sure 



1. Black women are three times more likel\ to develop lupus 
than white women. 

2. Lupus is easy to diagnose 

3. Lupus usualK affects young women. 

4. Lupus can be treated. 

5. All people who have lupus experience a rash in the shape 
of a butterfly across the bridge of their nose and cheeks. 

6. Lupus is always fatal. 

7. A person with some of the following signs should see a 
doctor. Common signs of lupus include: painful or 
swollen joints, unexplained fever, chest pain with 
breathing, unusual loss of hair, pale or purple fingers or 
toes from cold or stress, red rash or color change on the 
face, sensitivity to the sun, and low blood count. 



"I 



□ "I 



□ 


□ 


o 


a 


□ 


n 


a 


a 


o 


a 


a 


D 


□ 


□ 


n 


a 


a 


o 



DO YOU KNOW ENOUGH ABOUT 
LUPUS? 

As many as 1 in 250 black women will develop lupus. Do you know enough about lupus to protect 
yourself and your friends from the complications of this disease? Answer the following questions and 
read the answers provided to learn more. 



1 . Black women are three times more likely to develop lupus than 
white women. 

2. Lupus is easy to diagnose. 

3. Lupus usually affects young women. 

4. Lupus can be treated. 

5. All people who have lupus experience a rash in the 
shape of a butterfly across the bridge of their nose and cheeks. 

6. Lupus is always fatal. 

7. A person with some of the following signs should see 
a doctor. Common signs of lupus include: painful or 
swollen joints, unexplained fever, chest pain with breathing, 
unusual loss of hair, pale or purple fingers or toes from 

cold or stress, red rash or color change on the face, sensitivity 
to the sun, and low blood count. 

If you are experiencing signs of lupus, please visit your doctor or health clinic. If you would like 
additional information about lupus, please contact your local chapter of the following organizations: 

Lupus Foundation of America, Inc. The American Lupus Society 

4 Research Place 3914 Del Amo Boulevard 

Suite 800 Suite 922 

Rockville, Maryland 20850-3226 Torrance, California 90503 

(800)558-0121 (800)331-1802 







Not 


rue 


False 


Sure 


□ 


□ 


□ 


□ 


□ 


□ 


a 


□ 


□ 


n 


□ 


□ 


n 


a 


□ 


n 


□ 


□ 


□ 


a 


□ 



ANSWERS 

1 . True. 

2. False. Lupus can be difficult to diagnose and is often mistaken for other illnesses. The doctor can test for 
lupus, but also needs an accurate and complete patient history. You are the only person who can describe 
your symptoms. 

3. True. Lupus usually develops in young women between the ages of 15 and 44. 

4. True. It is important to visit a doctor if you have signs of lupus. Early diagnosis and treatment may 
prevent serious complications. 

5. False. Some patients experience a red rash or color change on the face, but some never do. 

6. False. With early medical care, most people who have lupus can lead active, productive, and fulfilling 
lives. 

7. True. These signs are more important when they occur together. 



\X] SlGNSOI l.l IMS \%j 

1. Red rash or color change on face, 

often in t ho shape of a butterfly, 
across the bridge ol the nose and 
the checks. 



I'.imlul or swollen joints. 



3. 


l nexplained fever. 


4. 


( hcsi pain with breathing. 


5 


1 MlSUaJ loss ol hair. 


6. 


Pale or purple lingers or iocs from 




cold or stress. 


7. 


Scnsiti\ it) to the sun 




Lou blood count. 



I . ii further information, v isit your doctoi oi 

health clinic and contact yOUT local chapter 

ol the follow ing organizations: 

The Lupus Foundation of America. Inc. 

4 Research Place 

Suite ISO 

Rockville, Maryland 20850-3226 

(800)558-0121 

The American Lupus Society 
3914 Del Amo Boulevard 
Suite ^22 

Torrance. California 90503 
(800) 33 1-1 so: 



ra 



Lupus in High Risk Populations 




r^ (X) w ^n ^n 

\SKJ WKJ \SKJ \yKj WKJ 















W [Y] W M W fY] W M Cfl M fYl 
wkJ L/nJ iAJ KskJ UkJ l/\J wkj 00 00 Ukj Wkj 

W [Y] W M [Y] ffl [Y] (Yl W [Yl M 
wkj UkJ \Jk) Wkj v>0 OO OO Vkj \Jkj Vk) Ukj 



■m 



HOW TO FIND ADDITIONAL 
RESOURCES 



Lupus Foundation of America, Inc. 

(LFA) 

4 Research Place 

Suite 180 

Rockville, Maryland 20850-3226 

(800) 558-0121 



The American Lupus Society (TALS) 

3914 Del Amo Boulevard 

Suite 922 

Torrance, California 90503 

(800)331-1802 



These organizations, which can provide a list of their chapters around the country, publish 
booklets and newsletters and have programs about the causes, symptoms, and treatment of lupus. 
They also can make medical referrals. 

National Arthritis and Musculoskeletal and 
Skin Diseases Information Clearinghouse 

Box AMS 

9000 Rockville Pike 

Bethesda, Maryland 20892 

(301)496-8188 

The National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse 
(NAMSIC) is a national resource center for information about professional, patient, and public 
education materials; community demonstration programs; and Federal programs related to 
rheumatic, musculoskeletal, and skin diseases. The Clearinghouse maintains a bibliographic 
database of educational materials from which it produced Lupus Patient Education Materials: 
An Annotated Bibliography . This list of resources contains 162 citations to educational 
materials for patients and their families about the symptoms, diagnosis, and treatment of lupus. 
The bibliography is available for $4 from the Clearinghouse. 



61 



■w 



RESOURCES FOR COMMUNITY 
PROGRAM PLANNING 



Bacon' s Media Directories: Publicity 
Checker, Radio/TV Directory, Media 
Alerts, Chicago, IL: Bacon's 
Information, Inc.. 1993. Order from 
Bacon's Information, Inc.. 332 S. 
Michigan Avenue, Chicago, II. 60604. 
(800) 621-0561. 

Bur relic's Black! Hispanic Media 

Directory. Livingston. NJ: Bundle's 
Media Directories. 1992. Order from 
Burrelle's Media Directories, 75 E. 
Northfickl Road. Livingston, NJ 
07039. (800)631 1160 

Chisnall, Peter M., Marketing Research, 

New York: McGra* Mill. \^S(v Order 
from McGraw Mill. Inc.. 1221 Avenue 
of the Americas. New York, NY 
10020. (80()i $38-3987. 

Green, Lawrence W. and Lewis, fiances 
M., Measurement and Evaluation in 
Health Education and Health 
Promotion, Palo Alto, CA: Mayfield 
Publishing Co.. 1986. Order Irom 
Mayfield Publishing Company, 1240 
Villa Street, Mountain View, CA 
94041.(800)433-1279. 



Kline. Mark; Chess. Caron; and Sandman. 
Peter. Evaluating Risk Communication 
Programs: A Catalogue of "Quick and 

Easy" Feedback Methods, Trenton, NJ: 
Neu Jersey Dept. of Environmental 
Protection. 1990. Order from Maps and 
Publications Sales Office, New Jersey 
Bureau of Revenue. CN417, Trenton, 
NJOS625. (609)777-1039. 

/ <<< ating Resources for Healthy People 

2(K)<) Health Promotion Projects. 
Washington. DC: Office of Disease 
Prevention and Health Promotion. 

1991. Order from ODPHP National 
Health Information Clearinghouse. P.O. 
Box 1 L33, Washington. DC 20013- 

M33. (800) 336-4797. 

Making Health Communications Work: A 
Planner's Guide, Bethesda. MD: 
National Cancer Institute. 1992. Order 
from Office of Cancer Communication, 
9000 Rock\ ille Pike. Bethesda, MD 
20892. (SOO)422-6237. 

Promoting Issues and Ideas: A Guide to 

PR for Nonprofit Organizations, New 
York: The Foundation Center. 1987. 
Order from The Foundation Center. 79 
5th Avenue, New York. NY 10003. 
(800) 424-9836. 



62 



EDUCATIONAL MATERIALS ABOUT 
LUPUS 

Fact Sheets, Booklets, and Books 



Arthritis Information: Systemic Lupus Erythematosus (Lupus). 

Atlanta, GA: Arthritis Foundation. June 1990. [20 p.]. 
Available from Arthritis Foundation. P.O. Box 19000, Atlanta, GA 30326. 
(800) 283-7800. PRICE: Single copy free. 

This brochure discusses the disease process of lupus and defines the two types, discoid 
and systemic. In a question-and-answer format, the brochure addresses the causes, types of 
people affected, diagnosis, and treatment. 



Coping with Lupus: A Guide to Living with Lupus for You and Your Family. 

Phillips, R.H. 

New York, NY: Avery Publishing Group. 1991. 276 p. 
Available from Lupus Foundation of America, Inc. 4 Research Place, Suite 180, Rockville, 
MD 20850-3226. (301) 670-9292 or (800) 558-0121. PRICE: $8.00. 

This handbook, written in a relaxed, informal style by a practicing psychologist, 
describes strategies and techniques aimed to improve the quality of life of people with lupus 
and their families. 



Fact Sheets. 

Akron, OH: Lupus Foundation of America, Akron Area Chapter. 
Available from the Lupus Foundation of America, Akron Area Chapter. 942 N. Main Street, 
#23, Akron, OH 44310. (216) 253-1717. PRICE: Free. 

A series of nine fact sheets about lupus written at a low reading level. 



Facts About Lupus. 

Rockville, MD: Lupus Foundation of America, Inc. 1992. 
Available from the Lupus Foundation of America, Inc. 4 Research Place, Suite 180, Rockville, 
MD 20850-3226. (301) 670-9292 or (800) 558-0121. PRICE: $3.95 per series. 

A series of brochures on a wide range of lupus-related topics including lifestyle, 
pregnancy, skin, kidneys, central nervous system, etc. 



63 



■03 



Learning About Lupus: A User Friendly Guide. 

Moore, M.E.; McGrory, C.H.; Rosenthal. R.S.. eds. 

Wayne, PA: Mainline DeskTop Publishing Company. 1991. 85 p. 
Available from Lupus Foundation of Delaware Valley, Inc. 44 West Lancaster Avenue, 
Ardmore, PA 19003. (215) 649-9202. PRICE: $5.00 per cop) plus $1.50 postage. 

This book, written by medical advisory board members of the Lupus Foundation of 
Delaware Valley in Pennsylvania, is targeted lor newly diagnosed patients and provides an 
overview of the multi-organ involvement that ma) occur in lupus. 



Living With It: Why You Don't Have to Be Healthy to Be Happy. 

Szasz, S. 

Buffalo, NY: Prometheus Hooks. 1991. 243 p. 
Available from Prometheus Books. 700 Eas1 Amherst Street. Buffalo. NY 14215. 
(716) 837-2475 or (800) 421-0351. PRICE: $22.95. ISBN: 0879756594. 

This hook is the persona] account of a woman who was diagnosed with systemic lupus 
erythematosus (SLE) at the age ol 13. She recounts the stor) of her illness, how. it affected her 
adolescence and adulthood, and her experiences as a survivor. 



Lupus: A Guide for Patients. 
Hughes, G.R.V. 

loiiancc. (A: The \mcrican Lupus Society. 25 p. 
Available from The American Lupus Society. 3 ( )I4 Del \mo Boulevard, Suite u 22. Torrance. 
CA 90503. (310) 542-8891 or (800) 331-1802. PRICE: $3.00. 

This pamphlet discusses all major aspects o\ lupus, including its history, clinical 
features, various forms, testing, treatment, medication, research, and prognosis. 



Lupus and Pregnancy. 

Rosinsky. L. 

Heliogram. April 1990. [6 p.). 
Available from Lupus Network. 230 Ranch Drive. Bridgeport, CT 06606. (203) 372-5795. 
PRICE: $1.50. 

This fact sheet provides a comprehensive review of lupus and pregnancy presented in a 
question and answer format. Questions addressed include: will lupus interfere with the ability 
to get pregnant; will lupus symptoms flare during pregnancy: are any special tests needed: and 
will the baby inherit lupus. 



64 



«• 



Lupus and Women of Color. 

San Jose, CA: Lupus Foundation of America, Bay Area Chapter. 6 p. 
Available from the Lupus Foundation of America, Bay Area Chapter. 2635 North First Street, 
Suite 206, San Jose, CA 95134. (408) 954-8600. PRICE: Single copies free. 

This brochure briefly explains the symptoms and characteristics of SLE. A checklist is 
provided for people to determine if they may have one or more of the symptoms. Information 
is included on the activities of the Bay Area Lupus Foundation. This brochure is also available 
in Spanish and Vietnamese. 



Lupus and You. 

Reinertsen, J.L. 

Minneapolis, MN: Park Nicollet Medical Foundation. 1986. 2nd Edition. 32 pages. 
Available from the Arthritis Center, Park Nicollet Medical Foundation. 5000 West 39th Street, 
Minneapolis, MN 55416. (612) 924-2755. PRICE: $2.00; 10% discount for 25-100 copies; 
20% discount for 100+ copies. 

This booklet is intended to help people with lupus understand what it is, what effects 
it might have on their lives, and what they can do to help themselves and their doctors in the 
management of the disease. A glossary of lupus-related terms is included. 



Lupus Eritematoso. [Lupus Erythematosus]. 

Torrance, CA: The American Lupus Society. 1993. 18 p. 
Available from The American Lupus Society. 3914 Del Amo Boulevard, Suite 922, Torrance, 
CA 90503. (310) 542-8891 or (800) 331-1802. PRICE: $2.00. 

This booklet, written in Spanish, is for lupus patients. It provides a brief history of 
lupus, as well as the causes, diagnosis, symptoms, and treatment of the disease. A glossary is 
included. 



Lupus Erythematosus: A Handbook for Physicians, Patients & Their Families. 

Carr, R. 

Rockville, MD: Lupus Foundation of America, Inc. 1986. 60 p. 
Available from the Lupus Foundation of America, Inc. 4 Research Place, Suite 180, Rockville, 
MD 20850-3226. (301) 670-9292 or (800) 558-0121. PRICE: $3.95 



65 



■CO 



Lupus Erythematosus: A Patient's Guide. 

DuBois. E.L.; Cox, M.B.. eds. 

Torrance, CA: The American Lupus Society. 1993. 18 p. 
Available from The American Lupus Society. 3 1 >I4 Del Amo Boulevard. Suite 922, Torrance, 
CA 90503. (310) 542-8891 or (800) 331-1802. PRICE: $2.00. 

This booklet was written for lupus patients. It provides a brief history of lupus, as well 
as the causes, diagnosis, symptoms, and treatment of the disease. A glossary is included. A 
Spanish version is also available. 



Lupus Erythematosus in Braille. 

Torrance. CA: The American Lupus Society. 1990. 53 p. 
Available from The American lupus Society. 3914 Del Amo Boulevard. Suite 922, Torrance. 
CA 90503. (310) 542-8891 or (800) 531-1802. PRICE: $10.00. 

This publication is a Braille version of the American Lupus Societ) booklet, 'Lupus 
Erythematosus.' The publication was translated into braille b\ the Kentucky Department lor 
the Blind. It discusses lupus erythematosus, us diagnosis, symptoms, and complications. 



Lupus Erythematosus: What is L.E.? 

Torrance. CA: American Lupus Society. \pnl l U( >(). [2 p.). 
Available from The American Lupus Society. J914 Del \mo Boulevard, Suite 1 '22. Torrance, 
CA 90503. (310) 542-8891 or (800) 331-1802. PRICE: Single cop) free. 

This foldout fact sheel discusses systemic lupus erythematosus (SLE). a chronic. 
inflammatory, autoimmune disease. I he disease process of lupus is explained, and the criteria 
for classification of SLE are listed. Involved areas include the skin, joints, blood, heart, lungs 
and kidneys. Treatment consists ol controlling symptoms and attempting to put the disease into 
remission through medication and lifestyle changes. The fact sheet also describes the American 
Lupus Society, its purposes and practices, and how it obtains funds. 



66 



«• 



Lupus News. 

Rockville, MD: Lupus Foundation of America, Inc. 
Available from the Lupus Foundation of America, Inc. 4 Research Place, Suite 180, Rockville, 
MD 20850-3226. (301) 670-9292 or (800) 558-0121. PRICE: $15.00 per year. 

This is the official newsletter of the Lupus Foundation of America and is published 
three times a year. Issues typically include articles written by physicians on a variety of topics 
related to lupus. In addition, the newsletter provides updates on research and legislative issues. 
Book reviews and letters provide subscribers with additional and alternative sources of 
information. 



Lupus Today. 

Torrance, CA: The American Lupus Society. [8 p. average]. 
Available from The American Lupus Society. 3914 Del Amo Boulevard, Suite 922, Torrance, 
CA 90503. (310) 542-8891 or (800) 331-1802. PRICE: Call for subscription information. 

This newsletter is published by The American Lupus Society. An average newsletter 
contains information about the symptoms of lupus, as well as about updates in lupus diagnosis, 
treatment and research. Other articles in the newsletter describe meetings and conferences of 
The American Lupus Society, and accomplishments and future goals of The American Lupus 
Society. Ordering information for books about lupus also is provided. 



Lupus Words & Terms. 

St. Clair Shores, MI: Michigan Lupus Foundation. 1983. 6 p. 
Available from the Michigan Lupus Foundation. 26202 Harper Avenue, 
St. Clair Shores, MI 48081. (313) 775-8310. PRICE: Single copies free. 

This pamphlet provides 114 definitions of medical words and terms that patients may 
encounter while reading about lupus erythematosus. 



A Patient's Story. 

Aladjem, H. 

Rockville, MD: Lupus Foundation of America, Inc. 1986. 15 p. 
Available from the Lupus Foundation of America, Inc. 4 Research Place, Suite 180, Rockville, 
MD 20850-3226. (301) 670-9292 or (800) 558-0121. PRICE: $1.75. 

A story based on life, representing fears, frustrations, and experiences of people with 
lupus. 



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So Now You Have Lupus: An Aid to Understanding the Psychological Aspects of Lupus. 

Epstein, L.; Romoff, B. 

Torrance, CA: American Lupus Society. 1988. 20 p. 
Available from The American Lupus Society. 3914 Del Amo Boulevard. Suite 922. Torrance. 
CA 90503. (310) 542-8891 or (800) 331-1802. PRICE: $2.00. 

This booklet was written by two therapists who also have lupus. The authors describe 
systemic lupus erythematosus and discuss in detail the associated psychological aspects of the 
disease. These include stress, depression, bodv and self-image, effects of corticosteroids, and 
sexuality. 



Tell Me About Lupus. 

Hindman, A. 

Torrance, CA: American Lupus Society. 1992. X p. 
Available from The American Lupus Society. 3914 Del Amo Boulevard. Suite 922, Torrance. 
CA 90503. (310) 542-8891 or (800) 331-1802. PRICE: $2.00. 

This booklet, written for young people, provides an introduction to lupus and explains 
how the illness is treated and managed. 



Understanding Lupus. 

Aladjem, H. 

New York. NY: Macmillan. 19X5. 247 p. 
Available from the Lupus Foundation of America. Inc. 4 Research Place. Suite ISO. Rockville. 
MD 20850-3226. (301) 670-9292 or (800) 558-0121. PRICE: $10.00. 

This book is for patients, their families, physicians and other health care professionals 
and general readers who would like to know more about lupus and gain a better understanding 
of the person with lupus. 



What is Lupus. 

Akron, OH: Lupus Foundation of America. Akron Area Chapter. 
Available from the Lupus Foundation of America. Akron Area Chapter. 942 N. Main Street. 
#23, Akron, OH 44310. (216) 253-1717. PRICE: Free. 

This six panel brochure, written at a low reading level, describes the types of lupus, 
cause, signs and symptoms, who gets lupus, how it is discovered, and treatment. 



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Audiovisuals and Posters 



Lupus: An Issue for the African American Community. 

Columbus, OH: Columbus Chapter of the Lupus Foundation of America, Inc. 1993. 

1/2-inch VHS videocassette (28 min.) 
Available from Columbus Chapter of the Lupus Foundation of America, Inc. Attn: Steve 
Smith, 1203 Westwood Avenue, Columbus, OH 43212. (614) 221-0811. PRICE: $10.00 plus 
$3.00 handling fee. 

This program is targeted to any person with lupus, but especially those from the 
African American community. 



Lupus Disease: Its Effect on Women. 

Washington, DC: National Public Radio, Horizons Series. 1988. Audiocassette. 
Available from National Public Radio Tapes. 2025 M Street, NW, Washington, DC 20036. 
(202) 822-2323. PRICE: $12.50. 

In this audiocassette, lupus patients discuss the symptoms and complications of their 
disease, and the daily struggles they must meet to live with lupus. 



Lupus: Insights, Emotions, Encouragement. 

Gill, W.; Gill, E. (Producers/Writers) 

Columbus, OH: Columbus Chapter of the Lupus Foundation of America, Inc. 

1987. 

1/2-inch VHS (54 min.); 3/4-inch broadcast-quality copy; 1/2-inch VHS PAL mode 

copy; 1/2-inch edited copy (14 min.) 
Available from the Columbus Chapter of the Lupus Foundation of America, Inc. Attn: Steve 
Smith, 1203 Westwood Avenue, Columbus, OH 43212. (614) 221-0811. PRICE: $28.25 (1/2- 
inch VHS); $43.25 (3/4-inch); $56.00 (1/2-inch VHS PAL); $11.25 (edited copy). 

This video, featuring discussions with doctors, nurses, patients, and families and friends 
of patients, focuses on strategies for living and building constructive relationships. Also 
discussed are signs and symptoms of lupus, how the disease changes the patient's life, coping 
with those changes, medication, reactions of families and friends, and the role of support 
groups. An edited 14 minute version is also available, suitable for viewing by general 
audiences at health fairs or clinics. 



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Lupus: The Great Imposter. 

Alexandria, VA: Lupus Foundation of Greater Washington, Inc. 

1/2-inch VHS and 3/4-inch U-Matic. 14 minutes. 
Available from the Lupus Foundation of Greater Washington. 515 A Braddock Road, 2C, 
Alexandria. VA 22314. (703) 684-2925. PRICE: $30.00 for VHS format, $45.00 for U-Matic 
format. 

In this video, several individuals who suffer from lupus arc introduced along with their 
friends and families. Viewers are informed about the basic nature of the disease and its effect 
upon the lives of those who suffer from it. The v ideo also features physicians who discuss the 
disease, the state of research into finding a cure, and the kind of support the ongoing research 
effort requires. This film was awarded a certificate ol merit from the American Medical 
Writers Association and a Golden Eagle Award from I he Council on International 
Nontheatrical Events, both in 1987. 



SLE: The Great Deceiver. 

San Jose, CA: Lupus Foundation o\ America, Bay Area Chapter. 1986. 

3/4-inch U-Matic, 1/2-inch VHS or Beta-Max II videocassette, or 

1 10 35mm. slides with audiocassette < JO mm.), color. 
Available from Lupus Foundation of America. Bay Area Chapter. 2635 North First Street, 
Suite 206, San Jose, CA 95134. (408) 954-8600. PRICE: $50 (videocassette. purchase), $125 
(slide/tape, purchase), $25 rental fee, applicable to purchase. Postage: $6 for slide/tape. $4 for 
3/4-inch video. 3 lor 1/2-inch video. 

This two-part program was produced primarily for newk diagnosed lupus patients and 
their families. Patients need to be informed about the medical facts, methods of treatment, 
potential problems, how they can belter manage then disease, and how to build better 
communication within their lannk and with others who play an important role in their lives. 



Someone You Know Has Lupus. 

Baltimore, MD: Maryland Lupus Foundation. 1988. 

1/2-inch VHS videocassette (10 min.i. 
Available from Maryland Lupus Foundation. 7400 York Road. Third Floor, Baltimore, MD 
21204. (410) 337-9000. (800) 777-0934 (MD only). PRICE: $25.00. 

This ten minute video filmed at Good Samaritan Hospital in Baltimore. MD details 
what lupus is and isn't, diagnosis, symptoms, prevalence, occurrence and treatment. In 
interviews with Dr. Thomas M. Zizic, Associate Professor of Medicine at the Johns Hopkins 
University School of Medicine, and several lupus patients, perspectives of doctors and patients 
are presented. Suitable for patients and family members as well as the lay community. 



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Voices of Lupus. 

New York: Wolf Pack and the Hospital for Special Surgery. 1992. 

1/2-inch VHS videocassette (28 min.). 
Available from Films for the Humanities and Sciences. P.O. Box 2053, Princeton, NJ 08543- 
2053. (800) 257-5126. PRICE: $149.00 purchase; $75.00 rental. 

This program uses stong, positive role models to show how women afflicted with lupus 
can help themselves through peer group support and better communication with their 
physicians and families. This autoimmune disease affects more than a half-million women 
from diverse social, cultural and economic backgrounds. Interviews with patients and 
physicians demonstrate positive strategies which can help people with lupus, their families and 
their physicians cope better with this painful, unpredictable illness. 



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MEMBERS OF THE TASK FORCE ON LUPUS IN 
HIGH RISK POPULATIONS 

Sponsored by the National Institute of 
Arthritis and Musculoskeletal and Skin Diseases 



Chairpersons: 



Evie G. Dennis, Ed.D. 
Superintendent 
Denver Public Schools 
Denver, Colorado 



Lawrence E. Shulman, M.D., Ph.D. 

Director 

National Institute of Arthritis and 

Musculoskeletal and Skin Diseases 
National Institutes of Health 
Bethesda, Maryland 



Matthew H. Liang, M.D., M.P.H. 

Associate Professor of Medicine 

Harvard Medical School 

Robert B. Brigham Multipurpose Arthritis Center 

Boston, Massachusetts 



Members: 



Milton H. Abram II, D.T.M. 

President 

Vice-Chairman of the Board for 

Government Affairs 
The American Lupus Society 
Milwaukee, Wisconsin 

Elaine Bratic Arkin 
Consultant 
Arlington, Virginia 

Barbara D. Butler 

Chairman 

Government Relations Committee 

Lupus Foundation of America 

St. Louis, Missouri 

Larry R. Crockett, M.B.A. 

Director 

Business and Industrial Assistance Division 

School of Business Administration 

University of Michigan 

Ann Arbor, Michigan 



Agnes H. Donahue, D.D.S., M.Sc.D., M.P.H. 
Executive Director on Women's Health 
Office of the Assistant Secretary for Health 
DHHS 
Washington, D.C. 

Sandra Ferguson 
Associate Council Director 
United Methodist Church 
Baltimore-Washington Conference Center 
Baltimore, Maryland 

Jacqueline Gibson, B.S.N. 

National Black Nurses Association, Inc. 

Little Rock, Arkansas 

Marc C. Hochberg, M.D., M.P.H. 
University of Maryland 
Baltimore, Maryland 

Sadako S. Holmes, R.N., M.P.H. 
Executive Director 

National Black Nurses Association, Inc. 
Washington, D.C. 



75 



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John M. Huber, M.S. 
Executive Director 
Lupus Foundation of America 
Rockville, Maryland 

Elizabeth Jameson 

Attomey-at-Law 

San Francisco, California 

Purncll Kirkland, M.D. 
National Medical Association 
Inglewood, CA 

lames E. Lewis, Ph.D. 
Professor of Medicine and 
Senior Executive Officer 
Department of Medicine 
University of Alabama ai Birmingham 
Birmingham, Alabama 

Hazel Farrar 
Program Analyst 
Office of Minority Health 
Rockville. Mar} land 

Nancy McCormick-Pickett 
Vice President 
Prospecl Associates 
Rockville, Maryland 

Vivian W. Pinn. M.D. 

Director 

Office ol Research on Women's Health 

National Institutes ol Health 

Bethesda, Maryland 

Avis Pointer. Ph.D. 

Vice President for Research and Development 
National Medical Association 
Washington, D.C. 



Lduard J. Roccella, Ph.D., M.P.H. 

Coordinator 

National High Blood Pressure Education Program 

National Heart. Lung, and Blood Institute 

National Institutes Of Health 

Bethesda, Mats land 

Naomi F. Rothlield. M.I). 

Professor ol Medicine 

Chiel 

Division ol Rheumatic Diseases 

School ol Medicine and Health (enter 

I niversity ol ( lonnecticul 

Farmington, ( lonnecticul 

John Rultm. Ph.D. 

Associate Directoi for Research on 

Minority Health 
National Institutes ol Health 

Bethesda, Mary land 

I'eter I. Singleton, Jr.. M.D.. D.S.C.. C.M.E. 

Professor 

Department ol Medicine 

Division ol Immunology and Rheumatology 

Moorehouse School ol Medicine 

Atlanta, < leorgia 

Karen V Straaton, M.D. 

Assistant Professor 

Di\ ision oi Clinical Immunology 

and Rheumatology 
Department of Medicine 
l niversity of Alabama at Birmingham 
Birmingham, Alabama 



Clarice D. Reid. M.D. 

Chief 

Sickle Cell Disease Branch 

National Heart, Lung, and Blood Institute 

National Institutes of Health 

Bethesda, Maryland 



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NIAMS Staff Participants: 



Julia B. Freeman, Ph.D. 

Centers Program Director and Director 

of Research on Women's and Minorities' Health 
Extramural Program 
NIAMS/NIH 
Bethesda, Maryland 

Steven J. Hausman, Ph.D. 
Deputy Director 
NIAMS/NIH 
Bethesda, Maryland 



Michael D. Lockshin, M.D., F.A.C.P. 

Director 

Extramural Program 

NIAMS/NIH 

Bethesda, Maryland 

Constance Raab 

Director 

Office of Scientific and Health Communications 

NIAMS/NIH 

Bethesda, Maryland 



John H. Klippel, M.D. 

Clinical Director 

Intramural Research Program 

NIAMS/NIH 

Bethesda, Maryland 



Barbara A. Weldon 

Writer/Editor 

Office of Scientific and Health Communications 

NIAMS/NIH 

Bethesda, Maryland 



Reva C. Lawrence, M.P.H. 
Epidemiology/Data Systems Program Officer 
NIAMS/NIH 
Bethesda, Maryland 



Contractor Participants: 



Evelyn Brewster, M.A. 

Senior Communications Associate 

Prospect Associates 

Rockville, Maryland 



Barbara Bayer Kaplan, Ph.D. 
Project Manager 
Johnson, Bassin & Shaw, Inc. 
Silver Spring, Maryland 



Catherine Burroughs, M.L.S. 
Subcontract Manager 
Prospect Associates 
Rockville, Maryland 



Phyllis Payne, M.P.H. 
Senior Associate 
Johnson, Bassin & Shaw, Inc. 
Silver Spring, Maryland 



77 



Under contract NO1-AR-0-2201 with the National Institute of Arthritis and Musculoskeletal 
and Skin Diseases, this kit was written by Phyllis Payne. Johnson, Bassin and Shaw. Inc.: 
graphic design and production by Crystal Hagan and Cathy Burroughs, Prospect Associates. 



THE TASK FORCE ON LUPUS IN HIGH RISK POPULATIONS 



The National Institute of Arthritis and Musculoskeletal and Skin 
Diseases (NIAMS), a part of the National Institutes of Health, leads 
and coordinates the Federal biomedical research efforts in lupus. The 
NIAMS conducts and supports considerable research on the causes, 
diagnosis, treatment, and prevention of lupus. The Institute also 
disseminates information and carries out special educational efforts. 



In response to findings that certain populations have a higher 
incidence, prevalence, and mortality rate of systemic lupus, NIAMS 
initiated a Task Force on Lupus in High Risk Populations. The 
purpose of the Task Force is to develop educational strategies 
directed to patients, the public, and health professionals that may 
help improve the outcome of lupus in populations at high risk of 
developing the disease. 



Task Force members include representatives from: 



♦ Department of Health and Human Services' Office of Minority 
Health. 

♦ Public Health Service Coordinating Committee on Women's 
Health Issues. 

♦ Office of Research on Women's Health, National Institutes of 
Health. 

♦ Office of Research on Minority Health, National Institutes of 
Health. 



♦ Lupus Foundation of America. 
'♦ The American Lupus Society. 



♦ National Medical Association. 



♦ National Black Nurses Association. 



♦ Health professionals and communications experts. 

♦ NIAMS program and public information staff. 



•*- N- 



U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Public Health Service, National Institutes of Health 

National Institute of Arthritis and Musculoskeletal and Skin Diseases 

NIH Publication No. 93-3445 

September 1993